Unintended Consequences of Opioid Regulations in Older Adults With Multiple Chronic Conditions

Christine S. Ritchie, MD, MSPH; Sarah B. Garrett, PhD; Nicole Thompson, BA; Christine Miaskowski, RN, PhD, FAAN

Disclosures

Gerontologist. 2020;60(7):1343-1352. 

In This Article

Results

Description of the Sample

Coordinators communicated with 49 potential participants. Fourteen screened out for reasons such as lack of chronic pain or fewer than three chronic medical conditions; 10 explicitly or tacitly declined to participate; one person was too distant to interview in person. Twenty-five individuals enrolled (Table 1). Over half were women and the majority were between 66 and 75 years of age (mean = 72 years). Four out of five were White and over half had a bachelor's or advanced degree. No respondents self-identified as Hispanic. Four out of five had "enough finances to meet daily needs." On average, participants had six chronic conditions (SD = 2.04; range 3–12; Figure 1).

Figure 1.

Number of participants with each chronic condition (n = 25). Note: No respondents reported kidney or liver disease.

Findings

Most of the older adults' experiences with or perspectives on opioids could be characterized as negative or as unintended consequences of the epidemic or the policy response to it. We identified four major themes: changes to the patient–clinician relationship; lack of patient agency (being able to make decisions or take responsibility for one's life) and difficulties with access to pain management; ambivalence and anxiety about existing opioid treatment/use; and concerns about future use (Table 2). The majority of interviewees (23/25) expressed at least one of these major themes in their interview. For each quotation presented, we indicate the study identification number, self-reported gender ("F," female and "M," male), and age of the respondent. We use an asterisk to identify respondents who reported using opioids for chronic pain at the time of interview.

Changes to the Patient–Clinician Relationship. Several respondents described challenging interactions with clinicians when they spoke about their opioid treatment or the opioid epidemic more broadly. For some individuals currently using opioids, these conversations created significant relational tension and strain. Respondent P11* (M, 68) reported being "really upset" with his clinician: "that for [my] legitimate reason … they would not help me with the pain … My interest is not in getting high; I just don't want to hurt." For these individuals, opioid regulations and system-level restrictions manifested in difficult interactions with clinicians and erosion of the patient–clinician relationship. P19* (F, 66) described an ongoing, emotionally fraught dynamic with her clinicians:

I get really, really resentful when doctors bring up the opioid epidemic like I'm a dope fiend. I find it very disrespectful. And I had to tell my doctor, I said, "I am asking you with all the dignity that I have, that my pain is not being addressed." And I almost had to beg him. I had to talk to him for at least ten minutes on him not wanting to prescribe but to do other things. And I've done everything that—I feel like I'm doing my part … all the seniors, they've all been cut back, and everybody's very resentful, resentful about being labeled the opioid addict.

Some patients' concerns about seeming "drug-seeking" made them reluctant to communicate honestly or straightforwardly with their clinician. P06* (F, 68), for example, said "I'm gonna tell [doc] how I'm feeling, and see maybe he'll have mercy on me. Maybe he'll order me some—I don't know—I'm not gonna ask. 'Cause I don't like [to seem] drug-seeking. There's such a stigma, and especially now."

In some cases, interviewees reported abandonment by or separation from a clinician because of these challenges. P21* (M, 69), described that his pain medication doctor,

Just dropped me out of the blue because he didn't want to be responsible for prescribing [Fentanyl] anymore. I looked high and low all over the city trying to find a pain management doctor and none of them would take me on … When they started me on in it eight or nine years ago, I was definitely told I would need to be on it for life so I fully expected that. Now, suddenly, that's not necessarily going to be honored anymore.

P19* (F, 66) described leaving her safety-net doctor "for several reasons," including because "she wanted me off of all opioids, and I said, 'That's not gonna be possible.'"

Not all of the older adults interviewed described difficult interactions. Some older adults indicated that how their clinician handled opioid prescribing in fact revealed caring and competence on the part of their clinician. Despite his frustrations, P11* (M, 68) reflected,

There was a day you could get a doctor to write you for anything. They just don't want to do that anymore … I have legitimate pain issues, and I can't even get them to do it. So, that tells you how serious I think doctors are taking this. Maybe not all doctors, but mine are. And that's okay. They're just looking out for me.

P05* (F, 85), who had a prescription for hydrocodone, felt the opioid epidemic had not affected the way her pain was being managed, instead saying, "I think the doctor's given me what I need right now, and, you know, she's very emphatic about how much to take and not to—you know, I trust her, [she's] a wonderful doctor."

Loss of Patient Agency and Difficulties With Access to Pain Management. Multiple patients depicted in their stories their lack of power or participation in decisions about their pain treatment. They also described a lack of access to effective, alternative treatment options. About accessing her opioid medication, P06* (F, 68) reported that "[the doctor] basically said 'Don't talk to me till December,' so I know I don't have any more … I'm running out, and then I get anxious. And I gotta go back to feeling pain all the time." In the meantime, she was using a medication that she found less effective for her pain. She drew a contrast between her current situation and one where she would have more control over her own pain management:

I believe right now that if the curtain was lifted, and they said, "You can have a prescription, and when you run out, you get another one." I would be in seventh heaven, because I would know I could manage my own pain. I would be in charge of my pain.

P19* (F, 66), revealed a similar tension, describing her ideal pain management scenario as

[being] able to have a higher dose for the days that it's really bad, and let me be the decision maker … Let me be the one to have some choices about my life. [Institution name], they really like encouraged people to be responsible, but then when it comes to opioids, I feel like they're treating me like a little kid."

Several respondents who had an opioid prescription indicated that they were not satisfied with their current treatment options. For some, such as P06 and P07 above, it was because they had not been able to access or retain the specific opioid or dose level they felt they needed to optimally manage their pain. One respondent who used opioids only for acute pain complained of inadequate access:

When I had the prostate surgery, they didn't give me morphine … I was in extreme pain, and it took probably 18 to 24 hours before I had relief … I think it was around the time when the opioid crisis was coming out in the news. And so I figured, 'Well, maybe that has something to do with it. But I'm in pain here.' (P08, M, 69)

Others deeply wished for effective alternatives to opioids but had none. P02* (F, 84), who did not want to take Tramadol, complained "there's nothing they can give me to replace it." P21* (M, 69) explained,

I don't want to be on [Fentanyl], I don't want to be constipated because of the drug, but even if I were to go off the drug, I would be in unbearable pain … I talk to my doctor about it every month, 'Is there anything else I could be on that I could get off narcotics?' And she says, 'Not really.'

Some respondents described specific ways that policy changes have made accessing their prescription opioids far more difficult. P12* (M, 75) described being upset that the "new government regulations" required that he pick up his medication "every four weeks on the day": "There's no oversupply. You don't build up anything … It makes me angry that—I absolutely understand it, but … dealing with the opioid crisis is not dealing with people with chronic pain." P13 (F, 72), who used opioids for acute pain, reported,

It's much harder to get those pills from the drugstore, and insurance companies are way more particular about when they refill them, so it's a pain in the neck … It's frustrating and it takes energy … For instance, if I'm in a lot of pain, I can't send somebody to the drugstore to refill my oxycodone; I have to go there. It doesn't matter if it's hard to walk.

In characterizing their loss or relative lack of power in these decisions, most older adults cast their doctors as the decision-making party. However, some described observing a loss of agency on the part of their clinicians as well. P11* (M, 68), for example, shared, "I am a little concerned … about this whole opioid crisis is making doctors afraid to do anything for their patients…"

Ambivalence and Anxiety About Existing Opioid Treatment/use. Even among patients who, with their clinicians, identified opioids as the best treatment for chronic pain, some felt ambivalent or concerned about their care plan. These concerns centered around addiction to the opioid and, to a lesser extent, overmedication. For example, P02* (F, 84) explained that she "would love to get off the Tramadol because it's an opioid," but had no effective alternative to it. She feared she was "probably addicted, but they can't give me anything in its place." P01 (M, 90) would wait to use opioids until his pain "gets up to a ten" and he is "incapacitated." He described this approach as having helped him to "avoid becoming totally dependent on an opiate or having bad effects from an opiate … [It] is the choice I made, but it's not a choice which pleases me, to say the least." For a few respondents, concerns about opioid use were rooted in their own past experiences with addiction. P11* (M, 68) limited how much of the prescribed codeine he took for this reason: "When I do take them, I only take one … I'm just so afraid. I don't want to do anything that's going to get me hooked in some way. … I would rather be in pain every day than to live like that [addicted] again." Some respondents in the sample described formal (i.e., clinician-approved) and informal efforts to reduce their dose because of these concerns.

Finally, multiple respondents expressed concerns about others' use of opioids. Some worried about opioid users in general who, due to their own choices or overprescribing, can get in "serious trouble" (P12, M, 75). P10 (F, 70), who did not use opioids, herself, was concerned about her spouse:

My husband is actually on an opioid. He is pretty careful about it … We are both pretty careful to make sure we don't get addicted to anything like that. Because obviously everybody thinks that [opioids] are a problem and that they've been overprescribed. So yeah, we don't want to get caught up in anything like that.

Concerns About Future use. Many respondents, spanning those with and without opioid prescriptions, described concerns about access to opioids in the future when they really need them. For some currently using prescription opioids to manage chronic pain, these concerns focused on whether they would have continued access to their medications. P15* (M, 67), for example, said he is not yet affected by decreased access, but recognizes that "there may come a point where that's not available to me. I feel bad for everybody who needs opioids truly and they may not be available." P21* (M, 69) worried

If my insurance company is going to continue to cover the price of the Fentanyl in the new year on the formulary. There's a warning that they might not … I'm really worried but what's going to happen if I can't get that prescription anymore."

Both prescription opioid users and nonusers expressed substantial concern about using higher doses of opioids, or using opioids at all, in the future. Many of them referenced the opioid epidemic and public health messaging around opioids. P23* (F, 69) said, "I don't wanna take too many pain pills … but over a period of time, [the pain is] getting worse … I don't wanna get hooked on them Oxycontin." P14 (F, 75), who used ice, heat, and physical therapy for her chronic pain, explained she had fear about "opioids for sure … It's such an epidemic in the country. I mean, I wouldn't even consider it." P20 (F, 72) echoed this:

I don't want to be addicted to anything … I've told my health provider repeatedly that I don't want anything that's opioid. If it's a pain medication that will lead to some kind of addiction, I don't need it. I don't want it. I'll suffer the pain.

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